A personal perspective on life with Aspergers

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When I started this blog I wanted to be positive. That’s why I called it Acceptable Face – because I was presenting the acceptable face of Aspergers – I would be showing how Aspies can live well and overcome difficulties. Today I am filled with doubt again. There is a hurdle and I really don’t know if I can get over it.

My toddler is not yet two. So far I think I’ve been doing a good job, but this last week has given me doubts. This last week has made me think, either it’s her illness making things awkward (she has a bad cold), or a natural phase, or it’s something I’m doing / not doing that’s wrong. She can’t tell me. So what if it’s me? What if I keep doing it? What if I’m changing the course of her whole life for the worse, right now, without having a clue?

How can I be a good enough parent when I can’t figure out what’s going on?

When I was a kid, I didn’t want a baby because I knew I wouldn’t cope well with spending that much time around a needy human being. Then I got older and thought maybe it’ll be OK. My hormones seemed very keen for me to have a baby. Now I have two issues. The problem I foresaw as a kid, and this new problem of ‘O shit, maybe I’m screwing up her life with my Aspie-ness’.

Because let’s face it, if I don’t know what’s wrong, it’s probably because I struggle to understand things from her perspective. Or it’s because she’s worked out that sometimes I get very irritated by her behaviour, because I want my own space. Either way, it’s the Aspergers getting in the way.

All I want is to be a good parent who doesn’t fuck up her child’s life. She’s not even two.

I recently read about a mother whose three-year-old son has just been diagnosed with autism. She had no idea, she thought he was a normal boy who had tantrums and could be shy or sometimes a bit rude. To me that sounds like a lot of three-year-olds and I’m surprised it got as far as a medical diagnosis. Is this a good thing because the child and mother will now get support? Or have we detrimentally labelled a boy who has only just started his life?

Our understanding of mental health and developmental conditions has changed so much in the last few decades. When my mother was growing up, she was considered shy. If she was growing up today, she might be diagnosed with Asperger’s. I don’t think the lack of an official medical diagnosis has damaged her, she’s a happily married woman with friends and hobbies. If she had grown up with the autistic ‘label’, would it have changed her perception of what was possible and deterred her from her achievements?

Go back a hundred years or more and many men and women were locked up for misunderstood conditions and ‘illnesses’ which simply didn’t exist. The act of applying a medical label to a person could be incredibly damaging. Now, the damage is mainly to our perception of ourselves and the way other people think of us and treat us. We wouldn’t expect to be sent to an asylum just for having Asperger’s or being depressed. Instead we could start considering ourselves outsiders, failures, genetically flawed, emotionally or socially incompetent… did I miss anything?

Maybe I’m being ungenerous. Maybe it is more helpful to give a name to what we are so that we can talk about it and understand it as something that can be managed and supported. But I still think of that little boy and the others like him who are being defined at an incredibly young age. Will they understand what the doctors are saying? Will they be able to see beyond the black and white limitations defined in the medical textbooks?

Although the causes for autism are not known, it’s common to think that the condition is genetic, and therefore lifelong. For higher functioning autistics – like those with Asperger’s – the symptoms can be dealt with by learning coping strategies. This doesn’t mean we’re no longer Aspies, it just means we adapt to the impairment in the same way an amputee might learn to chop vegetables with their foot.

Today, I read an article that reported on scientific research which seemed to indicate that, in some cases, autism could diminish over time to such an extent that the diagnosis can be reversed. In other words, some people can grow out of it. Does this mean autism has nothing to do with our genes? Is it really not as fixed as we thought?

Our rich tapestry

I’ve also been reading about epigenetics – a relatively new way of looking at the interplay between genes and the environment. The previously held conviction that ‘genes are fixed’ is falling down and they have been shown to be affected by environmental factors such as diet and parenting. So, even if autism is controlled partly or primarily by our genes, it shouldn’t surprise us to find out that the outcome can change.

Equally, since autism is experienced as a spectrum ‘disorder’, it doesn’t take a great stretch of imagination to think that there are some people who are very close to the highest end of that spectrum, and that it might be possible to make a leap into the land of the neurotypical.

For those lower down the spectrum, those who struggle more with the basics of life such as having a career and living independently, the picture seems less hopeful. But becoming neurotypical shouldn’t be a goal for anyone. Life isn’t just hard for those on the spectrum – everybody gets tested and everybody has problems to deal with.

If we all coped the same way and followed the same patterns then what would be the point?

Forget normal

I don’t care that it might be possible to one day fall out of autism and into ‘normal’. What matters to me is knowing that I can cope with what I have and that others on the spectrum can also make improvements and change their lives for the better. Not with the aim of becoming normal, but simply to live their lives in a way that makes them happy.

I have this vague recollection of hearing that pets, and especially dogs, can help develop children’s social skills. If the pet is something stroke-able it also helps to soothe children and adults. Today I read that robots have also been found to help children with autism learn and develop.

The robots model good behaviour and, because autistic people feel more comfortable with technology than with other humans, they’re easier for the children to interact with and learn from. As someone who has wanted an Asimo from the moment I first saw one I imagine this must be a wonderful thing for children on the autism spectrum.

I go though phases of thinking it would be nice to get a dog but I always decide I don’t want one. A robot on the other hand… what’s not to love? Next to Asimo my favourite is the cycling robot. I love the way it puts its feet down and then struggles to balance as it starts cycling, just like a person.

One day I hope Asimo-style robots will be cheap and prolific enough to be used in hospitals and to help provide companionship to old people who struggle to get out. I also hope there will be more in schools, because these are extremely difficult to deal with for children who have autism.